A Little Poisoning Along the Road to ME/CFS
Looking at my symptoms, many of which are far less these days and some are gone, it would be easy to figure that I'd just been dealing with some heavy-duty menopausal issues.
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Anyone successfully come off sleep meds

Discussion in 'General Treatment' started by heapsreal, Sep 7, 2011.

  1. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Just wanting to know if anyone here with cfs/me who had bad symptoms of insomnia from the start of cfs/me who has been able to come off sleep meds and been able to sleep well again. I understand theres going to be an adjustment period before sleep would possibly return to normal.

    Im just wanting know this i suppose as i dont really know if my sleep problems now are from cfs/me or from being on sleep meds for so long. Even on meds my sleep go's whacky and when this happens i just stop my benzo sleep meds and put up with the crappy sleep for a few days and then return to benzo's where i start to sleep better again for awhile, which i think is probably from having the break from benzo's and reducing the tolerence to these meds. But as you can see its very up and down way to live and sleep.

    I know if i taper off sleep meds im going feel like crap, so will be making sure i have a few weeks off work, but if i do this i would like to know if it could help as i dont want to go through the torcher of coming off if its not going to help me and its the cfs/me thats still causing my sleep problems and its not the medication. So catch 22, is it chronic use of sleep meds or is it cfs/me causing insomnia.

    I have had a sleep study done with little sleep but apparently enough to diagnose apneas etc, basically i had to periods of sleep between 10-20mins long, and i got minimal deep sleep. As for medication i havent used any large doses eg 10mg of valium or 2 zopiclone which is 15mg and i may add an antihistamine or baclofen to it and i use neurontin, so 2 things for sleep and neurontin. I have added a few natural things of late which have helped some but nothing is perfect. Stuff i have read about people being addicted to benzo's and tapering off, they were on doses much larger then myself and tapered over a long period of time as in months. SO going by that it shouldnt take me long to taper off 10mg of valium but then again these people didnt have cfs/me.

    I just dont really know what to do. my me/cfs symptoms have improved alot over last couple of months and sleep is the last and worst symptom i have to conquer, at the moment, touch wood. I would appreciate everyones thoughts and experience.

    cheers!!!
     
  2. xchocoholic

    xchocoholic Senior Member

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    Hi heaps,

    I have disabling ME/CFS and I took myself off Klonopin (+ the occasional Benadryl) after 16 years. I was taking it for nocturnal myoclonus aka jerking myself awake when entering rem. My sleep problems appear to be related to anything that challenges my adrenals. Gluten definitely nails me but I just figured out that too much NoSalt will do it too. My diet is super clean, only organic meats, fruits and veggies, because I know how chemicals affect my adrenals.

    I don't normally need any supplements to sleep but if I'm feeling too awake at bedtime, I use 100 mg sun Theanine, 100 mg natural factors 5HTP (only brand that works for me) and 3 mg source naturals melatonin to ensure a good nights sleep . If I still can't sleep at that dose I raise it to 9 mg melatonin, 300 mg theanine and 300 mg 5HTP (total not in addition..) I took me awhile to find the right dose.

    Also, going to sleep at my regular time helps too. Speaking of which ... it's that time.

    I avoid these because they make me feel mentally sluggish the next day though ... hth ... x

    PS. FWIW .. the more I see how my symptoms are related to foods, chemicals, etc, the more I see ME/CFS as just a group of symptoms that can, hopefully, be treated ... lets hope anyways ... tc
     
  3. K2 for Hope

    K2 for Hope ALways Hoping

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    I can definitely relate to what you are going through and it's tough. Had insomnia for over 15 yrs...

    I also had 2 sleep studies, both gave stats of 4.5 hrs sleep, no Delta sleep, but contradicted other parts (apnea, etc). As soon as I layed down to sleep, my body was exhausted and my mind wanted to talk... I had been prescribed multiple sleep meds including the benzo's.

    I read a lot about sleep nutrition (how to get a better night's sleep). Lots of usefull stuff here and on the Internet and from Dr's. I started changing daily habits by using meditation, eliminating stressful people or events, learn how not to "react" to stressfull situations, better nutrition, Bio-Identical hormone therapy as needed, different supplements, etc.

    I started by increasing melatonin to 30 mg every night around the same time (about 1 - 1 1/2 hrs prior to bedtime). I try to go to bed around the same time, not eat a big meal right before bedtime, get off computer at least 1 hr before bed, dark room, nothing that would excite the nervous system prior to bedtime. I have reduced the Benzo's by 75%, eliminated the muscle relaxors and all heavy sleep medications.

    I am now working with a Dr to see if I can keep reducing the amounts. He said it may take 6 months or more due to amount I was on. He is an Internist that incorporates multiple disciplines into his practice (Mind, Body, Spirit, Hormones). A mixture of Holistic, Eastern, Supplements, etc, prior to medications.

    I hope to get to a point where I am only on the melatonin, nutritional supplements and the heart meds as heart problems run in the family.

    I wish you the best as this is a cycle that is just no fun! :eek:
     
  4. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Wow 30mg melatonin, might look into that and ask my doc, i also use 5htp or tryptophan plus a couple of herbal supps too. I have a few of those holosync cd's which are for meditation and use to help with sleep but only while listening to them, now they might work 5% of the time. I wonder because its cyclic if its more related to infection stuff from cytokines which can occur when virus reactivate etc. I occassionally use seroquel but its hit and miss and definately not a tolerence issue as i use maybe once a fortnight and it either knocks me for 12 hours or i sleep from 0-2 hours which i think is very strange for a med to do, which i dont think its the med but what ever is broken in this head of mine.

    I just feel that if i can get my sleep sorted that my cfs will be alot better and almost back to normal.

    cheers!!!
     
  5. K2 for Hope

    K2 for Hope ALways Hoping

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    Jacksonville, FL 32258
    Yeah, I found that I could use the same meds and one time I would sleep 6+ hrs and the next time 4 interrupted hrs, so I started revising the schedule and meds to determine the best approach for me.

    Scheduled sleep time seems to be working the best. I increased the melatonin to try and get off the benzo's. I started at about 5-10mg and kept upping until I got a fairly good night's rest. I use the time-release ones as they seem to help me stay asleep.

    I tried the CD's, grey noise, etc, but the best so far for me is a scheduled bedtime. Just like a little child does better with scheduled bedtimes.. :hug:
     
  6. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    i used zopiclone/imovane for the first night in about 5 days as last time i slept 2 hours but last night slept good 8 with zopiclone, baclofen, lyrica and neurontin. NAytural stuff i did use 20mg melatonin which may have made a difference with withania, 5htp and phosphatidyleserine.

    I think 20mg melatonin may have made a difference but will try it again tonight. I have been looking into the time release melatonin, i was thinking of combining them with sublingual melatonin.

    cheers!!!
     
  7. john66

    john66 Senior Member

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    I have tried several times to get off sleep meds. Sometimes, when my scrip ran out early, I thought let me give it a try. The pattern is that I will go two or three days without sleep and I'll give into the desperation. At this point, I have a fear of not sleeping, which I have tried to address with therapists and counseling to no avail. I went through a period last summer where nothing worked. By nothing, I mean Lunesta (eszopiclone), Ambien or trazadone (trrazadrunk) (kidding). I would be more willing to try Seroquel, but it can cause diabetes and raise cholesterol, which I dont need any help with. When I did take Seroquel, I did sleep 12 hours. Probably the first time I did that since college. Walking around zombie like is no fun. I wish the FDA wasnt so helpful in protecting us from GHB (xyrem), it really helped me but the salt content made me throw up almost half the time I took it. They add salt to protect us from overdose. It is only available from one pharmacy in the US, and is comically expensive. OK rant over, at this point, I'm not even going to try to get off sleep meds. If I do, I feel I will be doing my body and mind harm in the way of reducing hormone production, immune function and overall sanity.
     
  8. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I dont think i have a fear of not sleeping, just hate the crappy feeling i get when sleep deprived. I know how u feel when u say go through the insanity of not sleeping with all its damage to hormones, immune function etc. Its when the sleep meds stop working and pointless using them for awhile that i think to myself if its something to do with meds or is it some type on damage to the brain from ME causing the sleep dysfunction, honestly i think its some type of damage to our sleep centre with maybe periods of med tolerence.

    I understand your concern about seroquel but from what i have read, the side effects u mention seem to occur at doses like 800mg for prolong length of time. But have also read that theres no increase in sedation with doses over 200mg, so going above 200mg isnt going to improve sleep. I find it is quite good for catch up sleep on weekends or when sleep has been very rugged of late but it only works for one night, using it 2 nights in a row and it doesnt seem to work. I find i need extended lengths of time off, so i use it maybe once a fortnight but it can be hit and miss with between 2hrs and 12hrs, sometimes 50mg works and sometimes 100mg works, tried higher once but man did it dry me out, my mouth had no moisture in it at all. I also find when i wake up after using seroquel that my back pain is aggravated, maybe it dries my joints out. My optometrist said the other day that my eyes produce little moisture and with my immune system problems i possibly have sjrogens and from reading up this can effect my joints, so wonder f the seroquel side effects i get aggravates the problems in my joints.

    XYREM would be good if approved for cfs/me but i have heard from others that it hasnt been as good, though others have said its great and others still need ambien with it to get to sleep. I find treating insomnia is like a dog trying to catch his tail. Sleep is just so inconsistant.

    cheers!!!
     
  9. soxfan

    soxfan Senior Member

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    I have successfully come off sleep meds a number of times over the past 5 years. It is horrible to go through but I usually take it very slow. I take Lunesta so I will usually start at 1/2 tablet for a couple weeks and go down from there. Yes...even on 1/2 tablet I sleep terrible but there is no way of getting around that. I sometimes can stay off for a month or two but then I usually have to start up again. I know I am totally dependent on them and am also thinking do I really need them or just addicted. I would love to be able to sleep without them because I never get a good sleep anyway and always wake up tired. Lunesta does let me sleep instead of laying awake all night.

    I am going to start the quest again to taper off. I have started using 5HTP at a really low dose along with the lunesta. I will gradually decrease the lunesta and increase the 5 HTP. There is nothing else I have ever tried that will knock me out.
    I actually tried a new melatonin called super snooze. I am really sensitive to anything at all so I took half dose and it made me so drowsy I couldn't even walk. So I might tried a whole dose. It has melatonin and a bunch of other herbs including valerian etc...

    I am not worried about laying awake all night it is the next day that I worry about especially if I have to work. No sleep makes me feel soooo horrible especially if I have taken like 1/2 lunesta and not slept. That is really the worse....

    It is scary to think that if I ever didn't have a lunesa I wouldn't sleep at all and I don't like being so dependent like that. Before all this my sleep was so wonderful.....

    The only concern I have is that when I get into bed at night I am usually so exhausted and over stimulated inside that I can't calm down enough to sleep so I am hoping the 5 HTP will help with that. I am thinking at this point that sleep meds might be causing my poor sleep quality and the only way to know is to come off them. Good luck to us all........
     
  10. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Its the trying to live in the normal world when your sleep isnt normal, maybe if we could sleep when we needed to or able to we could maybe survive but not able to function and work in the real world. Its when i go to sleep at 10pm and wake at 1am and then have to work the next day, aarrgghh, its like torcher, i just dont go to work when this happens, just cant function.
     
  11. soxfan

    soxfan Senior Member

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    I have to say that I almost always sleep well but it is of a very poor quality...I wake up 90 percent of the time feeling totally unrested and tired. I am sure that if I could get a good quality sleep it would make a world of difference in how I feel every day. I don't know how to achieve this since I have already tried at least 15-20 different combinations of things to get this. I did have a sleep study done already and nothing was out of the ordinary or so they said....

    Even when I have slept most of the night there are days when I can barely function at work because of the feeling like I haven't slept at all....horrible and very stressful to try and get through each day.
     
  12. Nielk

    Nielk

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    The way I understand it, sleep is the most crucial activity that is needed for ME patients. The reason being that if you lack sleep, it will adversely affect all the other symptoms. That is why most doctors who are specialists in ME prescribe medications to help with the sleep. If you can achieve sleep with supplements - that's great and the preferred way but, many patients need something stronger. The doctors believe that these heavier drugs are a lesser evil then lack of sleep.
    Heapspray,

    You mention that you have been feeling better with all other symptoms except with sleep. I would be weary to play around now and experiment with different otions of fear that it will effect your other symptoms. I would wait a while and enjoy the benefits of feeling better. Let your body adjust to this state and down the line, try to get off the sleep meds. It is obviously not an easy thing to do. This is just my personal opinion.
     

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